Lymphoedema… It’s not just about ‘leaky legs’

In the first of a two-part blog Lindsey Lister, Lymphoedema Nurse Specialist and Catherine Best, Practice Educator at Saint Catherine’s Hospice in Scarborough provide insight into the often-debilitating and hidden impact of lymphoedema – a condition commonly known as ‘leaky legs’.

Introduction

Educating the global healthcare workforce is a significant challenge, made easier by the numerous awareness days and weeks throughout the year. 2022 is no exception, with cervical cancer prevention week and Dry January being recognised in January and World Cancer Day and Eating Disorders Awareness Week in February, the earlier we are able to get the message out there, the sooner we can make a difference.

Although it is evident that we still have a long way to go before we can say we have conquered many of the debilitating non-communicable diseases that exist today, nurses and other healthcare professionals are in a unique position to make a difference by making every contact count. Due to its frequently misunderstood and debilitating impact on a person’s life, one such condition that requires special attention is lymphoedema.

Lymphoedema Day is recognised across the World on 6^th March, and healthcare professionals are being provided with the educational opportunities and resources to make a difference in the lives of those we serve. 2022 is the 7th year of World Lymphedema Day, the aim of which is to educate the world of the various significantly debilitating diseases linked with lymphoedema, including:

• primary and secondary lymphoedema
• lipoedema
• lymphatic filariasis
• lymphatic malformations
• the full continuum of diseases impacted by the lymphatic system.

So, what is lymphoedema?

Lymphoedema occurs as a consequence of the lymphatic system failing to control the fluid equilibrium in the tissue spaces, resulting in oedema or swelling as it is frequently known. Any area of the body can be affected, although most commonly it occurs in the upper and lower limbs. Lymphoedema is categorised into Primary and Secondary types. There is no cure, but the condition can be managed.

The Lymphatic System

Understanding how the lymphatic system works can help you to understand why lymphoedema occurs and why treatment needs to be specific to individual need. The lymphatic system is a network of fine drainage channels located around the body the aim of which is to remove excess fluid and waste products via a sticky colourless fluid called lymph and has 3 main functions:

• maintain balance of fluid by its mobilisation to the circulation from the interstitial spaces
• absorption of specific dietary fats from the intestines into the circulation
• acts as an immune defence by stimulating an immune response through mobilising antigens and removal of defective and non-functioning cell tissue

What is the difference between oedema and lymphoedema?

Lymphoedema occurs as a result of direct damage to the lymphatic system, whereas oedema happens as a result of a problem with another system of the body, which has an effect on the lymphatic system; for example, heart failure can lead to oedema in the legs, feet and ankles.

Often associated with breast cancer, due to the damage which can occur to the lymphatic glands during treatment, lymphoedema can also be associated with a variety of complications associated with other treatment regimens and includes particular risks associated with:

• melanoma skin cancer
• gynaecological cancers – such as cervical cancer and vulval cancer
• genitourinary cancers – such as prostate cancer or penile cancer

But it’s not just treatment regimens that can cause problems. Lymphoedema itself can lead to problems such as cellulitis also known as erysipelas – an infection of the skin and subcutaneous tissues, the main culprit being that of Grade A Beta-haemolytic Streptococcus, which occurs as a result of impaired immunity and lymphatic drainage. An incidence may present within minutes and remain low grade for a couple of weeks before visible symptoms occur; symptoms which include:

• redness
• pain
• increased swelling
• heat

In order to harmonise treatment regimens, a consensus on the treatment of cellulitis was agreed by the British Lymphology Society in 2016 and remains in use today. The British Lymphology Society also works to support healthcare professionals through their EveryBodyCan Campaign to give those who are at risk of developing lymphoedema and those who have a diagnosis, with the encouragement they need to become and remain active throughout their life.

Cellulitis Alert Card

Patients who are registered with the Lymphoedema Service at Saint Catherine’s Hospice in Scarborough receive the Cellulitis Alert Card highlighting they have damaged immune systems, which increases their risk of developing cellulitis. The card is a joint initiative introduced in 2019 by the Lymphoedema Support Network and British Lymphology Society, providing useful information that may inform the healthcare professional of the management of cellulitis in lymphoedema.

Red legs

Red legs is a condition associated with chronic oedema and lymphoedema, characterised as redness of the skin presenting bilaterally and below the knees. Commonly caused by conditions such as venous eczema and lipodermatosclerosis. It can be confused with cellulitis and treated with antibiotics unnecessarily. The Red leg pathway is a resource that can help guide direct a clinician toward an appropriate cause of treatment.

Lymphangitis is a symptom that may also occur, which is blistering of the site of infection.  Mostly unilateral rather than bilateral, an individual often reports experiencing flu like symptoms prior to a visible presentation. In severe cases it can be life threatening requiring intravenous antibiotics.

Skin Breakdown

Cuts and grazes left untreated has the potential to increase fluid build-up and increase risk of lymphoedema. Effective skin care therefore,  is an essential element of lymphoedema management and requires a full assessment.

Wet Leg Pathway

‘Wet legs’ or Lymphorrhoea is a condition associated with lymphoedema, so called as accumulating lymph seeps through the skin and the patient will require a medical review to ascertain the cause of the issue. The Lymphoedema Network in Wales have created a pathway to follow for the management of this condition.

Lipoedema, not to be confused with lymphoedema, is a condition associated with a plethora of symptoms that can have a negative impact on patients’ lives. Rarely understood, this condition affects primarily women and because of this lack of understanding, many women never obtain a diagnosis. A sad indictment perhaps, but there are many things that we as registered nurses can do, which we’ll explore in the next blog.

Lindsey Lister (Lead Author)

Catherine Best QN